Started immunotherapy maintenance: What side effects can I expect?

Posted by Tom Anderson @ta52, Jan 26, 2021

Just had my first immunotherapy maintenance session late yesterday afternoon with Keytruda and Alimta only. Also had an injection of Zofram for anti-nausea. So far, no side effects. What have been some other experiences with side effects after maintenance? I had minimal side effects after the first four regular infusions so is maintenance even less harsh?

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@merpreb

@ta52- You devil, you! I had a port. Wouldn't that be more comfortable for you? It takes no time at all to be placed. Anyway one of my nurses, while inserting the needle into my port turned to answer a question that my husband asked and I inhaled very loudly- as if I was injured. She turned to me with the biggest eyes. I had her attention though! lol

There was a guy who would show up with donuts and a comment for everything. Finally, one day, even the nurses couldn't stand it so they increased some medicine in his infusion that put him out. You do have to survive anyway you can! haha

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I have infusions in my arm every three weeks so I'm usually over the sensation of being the human pin cushion when it's time for another.

I've taken to wearing cancer themed shirts to treatments: "Straight Outta Chemo", "Cancer Destruction In Progress" and a couple of old tee shirts I had from the band My Chemical Romance. I get looks from the other patients and smiles and laughs from the nurses.

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@merpreb

@ta52- Yes, you sure are lucky. That's what we need to do is to be thankful for all that we do have. I know, it sounds touchy-feely but when you have cancer, touchy-feely works. After I recovered from my first cancer I had 10 wonderful years of no cancer and I traveled to Europe and went to Paris for the first of 3 trips. I changed my life totally around. I have to rely on why I made my changes to keep me going, especially after 10 years when I had to do it again, and then 4 more times.

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My touchy-feely is manifested itself in this new found empathy for other patients and the need -- as @dutchw said - to spread the word about the new face of cancer treatment as a result of immunotherapy and targeted therapy.

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@ta52

My touchy-feely is manifested itself in this new found empathy for other patients and the need -- as @dutchw said - to spread the word about the new face of cancer treatment as a result of immunotherapy and targeted therapy.

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@ta52- Spreading the word is what gives hope to everyone who has cancer. That's what this site is all about. Hope that we have survived and can help others. Nothing can be more potent.

I think that people are afraid of immunotherapy because it's hard to understand and because it hasn't been around long enough, like chemo. Even the word chemo sounds familiar.

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@merpreb

@ta52- Spreading the word is what gives hope to everyone who has cancer. That's what this site is all about. Hope that we have survived and can help others. Nothing can be more potent.

I think that people are afraid of immunotherapy because it's hard to understand and because it hasn't been around long enough, like chemo. Even the word chemo sounds familiar.

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One of the best explanations of immunotherapy I've heard so far is that it is doing a CTRL-ALT-DELETE on your body's immune system and rebooting it to do what it should have been doing on its own: killing abnormal/cancer cells. And, with the potential of far fewer side effects than chemo.

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@merpreb

@dutchw- Thank you for being so honest. There have been a lot of people, who have been given solemn news about their cancer journey, have tried alternate medications. And all of us have probably given it some thought, if...One of my favorite doctors did so for her husband. However, Mayo Clinic only supports evidence-based, science supported medical treatments for cancer.

One thing that bothers me is that you haven't told your doctor. Do you have plans to do so?

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Yes, I plan on telling him when we return home in April. We are currently in Arizona at our winter home with another Dr. I don’t feel comfortable talking with. I’ve noticed Mayo Clinic adheres to the Keytruda/Altima cocktail regardless of how the patient tolerates the side effects. Can a patient refuse the Altima and just take the Keytruda while being treated at Mayo?

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@ta52

One of the best explanations of immunotherapy I've heard so far is that it is doing a CTRL-ALT-DELETE on your body's immune system and rebooting it to do what it should have been doing on its own: killing abnormal/cancer cells. And, with the potential of far fewer side effects than chemo.

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@ta52- Haha. Immunotherapy can either depress or activate your own immune system to fight your cancer. I'm not sure if that definition is totally accurate. I've never had it. But some day I probably will.

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@ta52

Thanks, Cindy. With all of the scans come other issues that have probably been hiding for years: kidney stones, enlarged prostate, etc. which they are dealing with in the here-and-now to head off complications in the future. While I feel positive about my direction I carry a real heavy sense of survivor's guilt when I hear about people like your husband and see other cancer patients on a much tougher road when I'm at Mayo. Cancer is cruel.

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@tats Feel positive and enjoy any and all gains you make against cancer and try not to have survivors guilt.....because as long as there are people who ARE getting better, there's always hope for even the sickest now and in the future. After all, I'm a breast cancer survivor (so far) and if I hadn't lived there would be no one to care for my husband now. What we need is more survivors.....we can't let cancer win this thing. You are a kind person. Hugs and good luck.

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@dutchw

Yes, I plan on telling him when we return home in April. We are currently in Arizona at our winter home with another Dr. I don’t feel comfortable talking with. I’ve noticed Mayo Clinic adheres to the Keytruda/Altima cocktail regardless of how the patient tolerates the side effects. Can a patient refuse the Altima and just take the Keytruda while being treated at Mayo?

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My Mayo/Alimta experience has been different. They have always said "since you are tolerating the treatment so well" leaving me with the impression that if I wasn't they would be ready with an alternative. I do know the folic acid, B-12 and steroid supplements are for the side effects of Alimta and you have to be pretty disciplined with those.

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@dutchw

Yes, I plan on telling him when we return home in April. We are currently in Arizona at our winter home with another Dr. I don’t feel comfortable talking with. I’ve noticed Mayo Clinic adheres to the Keytruda/Altima cocktail regardless of how the patient tolerates the side effects. Can a patient refuse the Altima and just take the Keytruda while being treated at Mayo?

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That is a great question and one we were exploring for my husband but alas, the Alimpta (Chemo) and Keytruda (immunotherapy) didn't work over the 12 weeks and now we're on the path to discover which thing caused his Atrial Fibrilation of the heart (chemo? radiation? Keytruda?). It's an important question because his options are now just radiation and chemo (no immunotherapy), as it didn't work. Immunotherapy ramps up your own immune system to kill the cancer cells and it's a blessing to so many. In my husband's case, they really aren't sure and have never been sure what type of cancer he has. No biopsy showed the cancer type conclusively so they had to 'guess' it was lung finally when it spread to his bones. It might not react to the Keytruda because he didn't have much PDL1 in the biopsy tissue, which is what Keytruda needs to work. Instead of killing cancer, I guess the Keytruda got bored and decided to attack his heart.....which immunotherapy can do - attack your own organs, although that is rare. Hugs to all and glad to hear this protocol is working for some...that's good news. We're still on the path to figuring out what might help my husband.
Hugs

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@ta52

You have to have humor, Dutch; it always helps. When the nurse set my IV on Monday knicked a vein. When she came back after a few minutes, pulled back the heated blanket and saw a lump about the size of a large grape at the injection site she went into full panic mode. You don't want a panicy nurse so I just said "now you can call me Lumpy" and that did the trick. There are times when you just have to do the unexpected and laugh at cancer.

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You’re absolutely right, laughter is a wonderful medicine!!! A friend of ours made me a dumb looking head band out of styrofoam and string with my name and date of birth on it. I wore it into the infusion room and just pointed at my forehead, whole room cracked up...

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